Our youth engagement service

Our Youth Engagement Service (HDYES) works with young people whose families are affected by Huntington’s. This confidential service is for anyone aged 8-25 living in a family affected by the disease (including extended family such as a cousin, grandparent, etc.).

The kind of support we provide is completely up to you.

HDYES can:

  • Provide one to one and/or group support sessions
  • Help you with talking to school, college, benefits departments or other agencies
  • Help you find any additional support you need
  • Introduce you to young carers projects
  • Provide a non-judgemental ear if you just want someone to talk to.

Some things we don’t do:

  • Lie; if we don’t know the answer, we will find out and come back to you
  • Keep secrets from you about the illness and how it may affect you
  • Try to take over the role of your family. We are here to support you but sometimes it will be your family or someone else you most need to talk to.

How do I access the service?

  • You can speak to your Specialist Huntington’s Disease Adviser (SHDA). They will complete a referral and send it through to the HDYES office. You will then be contacted by our HDYES specialist youth worker who will work with you to design how you want your support to look.
  •  A school, someone from your family or a social worker can get in touch.
  • Alternatively you can contact our HDYES directly by calling 0151 331 5444 or emailing [email protected] You can also write to HDA, Suite 24, Liverpool Science Park IC1, 131 Mount Pleasant, Liverpool, L3 5TF. (Be sure to include your contact details so we can get back to you.)

We also have other services and activities for young people. If you can’t find what you are looking for, you can contact us and we’ll try to help.